'You look tired.' No shit Sherlock.

Today I am tired.

Tired because sleeping is hard and my brain won't shut off. 

Tired because four kids and the subsequent mundane bollocks of such activities as Tesco. I really really resent spending precious life moments fucking food shopping in the monstrosity of the mega market. 

Tired because admin and bureaucracy. 

Tired because it feels like my head will explode with one more bloody Oxford-ism. I swear academia mostly involves learning multiple pretentious words to describe a few simple-ish concepts in a thousand different ways. Except philosophy. Fuck philosophy. 

Tired because I have been fielding seizure related phonecalls from school today. B's epilepsy is an arse right now. 

Tired because this past weekend revolved around trying to look after a very manic, very unsettled little boy. The consequence? My hands are covered in scratch marks, and anywhere on my body that's B-reachable bears some kind of bruise. 
Exhausted because life. 

I'm also sad today. I sat in Starbucks (I need shares in Starbucks) trying to read a paper on participatory action research, and I cried. Everything is unfair. Everything sucks. And the crappiest thing? I feel bad for feeling that way- other people have it way worse than I do. There's this constant internal battle raging-the pragmatic half of me shouting incessantly at the pathetic half to woman up and crack on. But watching my boy suffer every single day, and walking the thin line so as to cope but not normalise the shit and slip into complacency? Rough. Coping necessitates normalising the chaos. Normalising the chaos runs the risk of minimising shit that is really important in making life better for our boy.   

Remembering how very different our lives are and how we have no tangible family friends or usual social support network bites. Especially for an extrovert like me, this really sucks. I would have loved our kids to grow up alongside other kids- making memories and creating a sense of community. But doing anything with other families is pretty much impossible. Existing in our own little universe, that's fine. Just. Maybe. Trying to integrate ourselves into everyone else's isn't fun for anyone. People try to be nice, but the shitty reality is B's needs mean any attempt at joint activities is an epic fail before we've even begun.

Can I ask a favour at this point? Please don't put me in the 'another moany parent who thinks she has it hard' box. I get that all parenting is tough. Raising half decent, socially responsible humans is a huge task. However. Raising a small human with epic complexities; being thrown into an alien existence- one you never planned and one you have no idea how to navigate-that's another level entirely. I try really hard not to do the whole whiny moany mummy thing -I'm well aware that people don't want to hear that stuff as default.

But here's the thing. A social narrative which only tells the stories people are comfortable hearing negates the reality of disability, and makes the battle for inclusion incrementally more difficult. Inclusion means hearing all of it, and shaking things up to make it easier for those on the margins. And unlike Lionel Richie, it's not easy like Sunday morning- knowing the shit people go through just to survive, and choosing to engage with it is a mammoth challenge. 

The first part of that starts here. Sharing stories. Listening to the hard stuff and resisting the urge to spout sugar-coated platitudes. Assuming nothing from our ongoing silence- we're not ignoring you. We're tired and struggling to survive. 

So here it is. My story, raw and unfiltered... Thanks for taking the time to listen.

(Side note: currently unsure whether I need a hug, five pints, a super strong coffee, a stoner weekend away, three weeks sleep, or a slap in the face. If anyone could figure that out and let me know, I'd be most grateful....)









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